Thursday, March 31, 2011

This is the fifth and final Mission 2011 post on the topic of special events, a topic we have been exploring together during this month of March.

For those of you who do better when you write things down, I have a treat for you. I have created this Special Event Worksheet form to help you plan your next special event. I hope it gets you thinking about and planning for special events in a way that ensures your success.

Rather than go into a detailed discussion of how I would use this form, I decided to share with you the actually form I recently used when I planned for my trip to the Mayo Clinic in Arizona earlier this month. Simply click on the picture below to view it full size:

As you can see, I included a wrap-up section at the bottom of the form, a place to write down your thoughts on what worked, what didn't and what you'd like to try the next time. This section gives you a prompt to evaluate your experience so you can do better next time. And by better, I mean: have more fun, be more prepared, get more help, schedule more rest, avoid flare-ups, etc., etc., etc.

Next month I plan to talk about exercise during my Thursday Mission 2011 posts. I also plan to share with you a down-loadable copy of the Exercises to Help Manage Orthostatic Hypotension I received while at the Mayo Clinic in Arizona.

So have I inspired you to attend a special event this past month? I sure hope so! I'd love to hear about your upcoming events, so leave me a comment and let me know the special things you are planning to do.

Wednesday, March 30, 2011

8:00 a.m.: It's another early appointment, but instead of tests, today I get some answers. So after a quick breakfast at the hotel, the first one I've been able to eat with Robert in three days, we are back in the car heading down Shea Blvd., bathed in the early morning sunlight. On the drive over we talk about the progress the road construction crew has been making over the past four days resurfacing this busy street.

With the same efficiency that was the hallmark of my first appointment on Monday, the check-in process is a breeze and the wait time minimal. We find ourselves once again sitting on the couch in the examination room for just a few minutes before Dr. Goodman walks in and joins us.

As Dr. Goodman begins to speak I focus all my attention on him and try to absorb each and every word he says. A few minutes in, I suddenly realize that I should be taking notes. I glanced over at Robert and see him typing away on the keyboard of his Blackberry smartphone. Sure enough, he seems to have read my mind and has been taking notes for me.

In that moment, my gratitude towards him grew exponentially.

Based on my recollections and his detailed notes, here's a summary of Dr. Goodman's preliminary findings:

Based on the EMG and nerve conduction study, as well as comparing the current results to my previous study at UCLA in 2005, it is clear that my carpal tunnel syndrome has gotten progressively worse and his recommendation is for surgery to decompress the median nerve.

Because of my complicated medical history, he is unable to discern the cause of my orthostatic intolerance. He is also concerned that, unlike most patients with orthostatic intolerance, the condition will not get better over time and with age.

He expressed his disappointment that I was unable to get a consultation appointment with the Mayo Clinic Hepatology Department and encouraged me to keep my appointment with my hepatologist at UCLA in June. He remains concerned that my chronic hepatitis C infection is playing a role in my orthostatic intolerance.

Based on the EMG and nerve conduction study, there is no evidence of diabetic neuropathy, which means my efforts to tightly control my blood sugar have paid off.

Next he moved on to his treatment recommendations:

He changed the beta-blocker that I have been taking to another one in a different class. He feels this alternate beta-blocker will better address my symptoms of tachycardia and blood pressure fluctuations.

Because my blood pressure during the autonomic testing bounced between the hypertensive, normal and hypotensive ranges, he wants me to keep my salt intake in the moderate range, at about 4 g per day.

He also suggested that I drink 2 1/2 liters of water a day, but went on to say that some of that daily intake should be an electrolyte enhanced beverage.

In addition to the new beta-blocker, he also prescribed a medication called Mestinon which he felt would help my symptoms of fatigue and heat intolerance.

As I mentioned earlier this week, he provided me with detailed instructions on incorporating exercise into myself self-care plan and gave me a patient education handout entitled Exercises to Help Manage Orthostatic Hypotension. (I will try my best to include a copy of this document in my Thursday Mission 2011 post.)

Together we decided that it would be best for me to return to see him on an annual basis so I could take advantage of any new treatment options or advancements that might occur over time.

At the end of our time together, he let me know that he did not have the results of my blood tests nor did he have the results of the Holter monitor--which I was still wearing at the time. He let me know that he would be calling me towards the middle of the next week to give me the results of these tests. If I didn't hear from him by Wednesday, I was to call him.

As Robert and I headed out of the examination room and back to the waiting room, I once again asked him, "So what do you think?" This led to a long conversation that began in the waiting room and continued as we went down the elevator, to and from the pharmacy and back to our car. In the process, Robert and I reviewed all the information Dr. Goodman provided me as well as his treatment recommendations.

We both felt that this trip to the Mayo Clinic Arizona was well worth our time, as it provided new information about and new treatment options for my dysautonomia. We both felt reassured that being connected to a real expert in this area meant that I would be getting better care for this condition. We decided it would be worth our time and effort to come back every year to see Dr. Goodman.

After this appointment, we headed back to the hotel to rest and have lunch. Then headed out in search of some some cactus candy to bring back home with us.

3:30 p.m.: We returned back to the cardiology clinic to drop off the Holter monitor that I have been wearing for the past 24 hours. The technician had shown me how to remove the electrodes on my own, so all I had to do was place the device in the bag she gave me and hand it to the receptionist at check-in. We then headed to the pharmacy to pick up my two prescriptions and discuss with them how to go about transferring these prescriptions to my local pharmacy.

With the completion of these two tasks, my time at the Mayo Clinic Arizona came to an end. But in terms of my dysautonomia-related medical care, this is just the beginning. Over the next few months I will learn how this experience will affect the quality of my life with dysautonomia and my other chronic illnesses. And, of course, I will be sharing those results here with you.

Tuesday, March 29, 2011

I'm recounting the events that took place on my third day in Scottsdale, Arizona. This was a very busy day. This is also the day that the thermometer hit 90°, so I was glad to be spending most of my day inside an air-conditioned building.

Day Three - Wednesday, March 16

10:30 a.m.: Thankfully this busy day had a later starting time. However, with fasting blood tests scheduled for this morning, I arrived at the clinic hungry, having not eaten anything since dinner Tuesday evening. Being a type 2 diabetic, I've learned to have a contingency plan for these types of situations and so I packed a juice box and a piece of string cheese into my backpack to eat after the blood work was completed.

The instructions on my itinerary let me know that I would be going for a plasma catecholamine test which measures hormones that are produced by the adrenal glands. These hormones can affect blood pressure, heart rate and other organs as well. The procedure which took place in a lab area on the second floor entailed the insertion of an IV port into my arm. Several tubes of blood were filled from the IV port for some routine blood work. Then I was asked to lay down quietly on a bed in a darkened room to rest for 30 minutes. At the 30 minute mark, another blood sample was taken and then I was asked to stand for 10 minutes. At the end of 10 minutes, another blood sample was taken and then the IV was removed.

The trickiest part of this test was actually getting the IV port in. You see, my veins are deep in my arm and not visible. I chalk that up to my year of cancer treatment back in 1988 when I received four courses of chemotherapy. Ever since, I think my veins hide because they don't want medical professionals tampering with them anymore.

All in all, this wasn't a very difficult test. Fortunately for me, my blood sugar stayed in the normal range over the hour and a half in which this test took place.

My next stop was to the cafeteria for a late breakfast/early lunch with Robert.

1:15 p.m.: After lunch, I was off to the cardiology clinic on the concourse level to be given a Holter monitor. A Holter monitor is worn for 24 hours and it records your heart rate during that entire time. Four electrodes were stuck to my chest and connected by wires to a device about the size of a deck of cards. The tech put the monitor into a paper fabric pouch with strings attached which she tied around my neck. I immediately knew that this was going to aggravate my neck pain but I waited until I could get to the bathroom to move it into my bra where it would be less irritating.

The purpose of this test was to see what my heart rate looked like over the course of the day. In the past, this same test was used to capture data to calculate something called a heart rate variability study. I wasn't sure if Dr. Goodman was repeating the heart rate variability study but I decided to wait until I got the results to see what he had ordered.

1:45 p.m.: With two appointments down and one left to go, Robert and I decided to headed outside for a little while to soak up some of the desert atmosphere. I pulled out my camera and took some pictures of the landscape, the flora and the flags flying in the constant breeze. We found a bench in the shade where we sat for a while. Despite the 90° temperature, the combination of the breeze and the shade made sitting outdoors comfortable.

I then headed to the patient lounge on the concourse level where there was a room set aside with recliners and dim lighting for patients to rest. So I pulled out my MP3 player, plugged in my headphones, pulled out my Kindle and put my feet up to rest up before my next appointment. Before I knew it, the ambience of the room lulled me into a 30 minute nap. I woke up with just enough time to grab a quick snack and something to drink before I headed to my third and final appointment of the day.

3:15 p.m.: Out of all of the tests that Dr. Goodman had ordered for me, I was most worried about the EMG and nerve conduction study. My previous experience with this particular test at UCLA was not a pleasant one. I felt so dizzy and nauseated afterward I was unable to drive myself home and needed to call a friend to come pick me up. This time, I knew I had Robert with me so at least getting back to the hotel wasn't going to be an issue.

I also worried that I'd be in for even more problems this time since the testing would involve both my arm and leg. Yet despite all my concerns, the technicians and doctors who performed these tests did an outstanding job. I certainly see the benefits of having experienced medical personnel conducting these tests.

As for the actual tests themselves, they aren't the most pleasant things to endure.

The nerve conduction part of the test was performed by two technicians who tested my right leg and right arm. Electrodes were placed on the skin along the pathway of the nerve to be tested. So for example, for the median nerve which travels from the wrist to the fingers, an electrode was placed at the wrist and then three electrodes were placed, one each, on the thumb and the first two fingers. An electric shock was generated by the electrode at the wrist and information about how that shock traveled along the nerve to the fingertips was recorded in the electrodes placed there.

The EMG portion of the test was conducted by a physician. Ultra fine wires were inserted through the skin into the belly of a muscle. Once in place, the wires record the electrical activity of that muscle both at rest and during a contraction. During the test the doctor shared with me that the muscles in my shoulder were unable to relax completely which seems to be consistent with the chronic pain and muscle spasms I experience on a daily basis in this part of my body.

When he completed the EMG he shared with me that the most significant finding on the nerve conduction study was evidence of moderate carpal tunnel syndrome affecting my right hand. He explained that surgery would be indicated if I was bothered by the symptoms in my right hand. Once again, his findings were consistent with the numbness, tingling and pain I experience on a daily basis in my right hand.

After spending about an hour and a half in the exam room, my EMG and nerve conduction studies were complete and I was able to get dressed and head back out to the waiting room to meet up with Robert. I was pleasantly surprised that I was feeling no ill effects from the tests and wouldn't need to hurry back to the hotel room to spend time in bed recovering.

Phew! That concludes day 3 of my Mayo Clinic adventure. I'll be back to talk about my fourth and final day tomorrow, which includes my second visit with Dr. Goodman.

Monday, March 28, 2011

Image via WikipediaI write a lot about strategies that I've used to make a lot of changes in my life in response to the challenge of living with multiple chronic illnesses. Even though I've had a lot of success, I'm not perfect. There are still some aspects of life of chronic illness that I struggle to get a handle on.

Like you, I put a lot of effort into following the advice of my healthcare team and implementing their suggestions. One suggestion that I've heard over and over again is, 'You need to make exercise part of your fibromyalgia self-care plan.' In trying to implement this suggestion I've run into a lot of problems, with a major stumbling block: something called post-exertional fatigue.

What is post-exertional fatigue? It is an intense state of exhaustion brought on by physical exertion. It begins anywhere from an hour to 24 hours after exercise and can last up to 72 hours. Post-exertional fatigue is actually one of the hallmarks used to diagnose chronic fatigue syndrome, although in my case this could also be related to my chronic hepatitis C infection.

Prior to 2004, I used to work out on average three times a week for 30 to 45 minutes a session. Since living with fibromyalgia and chronic fatigue, I have found that walking a block can wipe me out for several days. It boggles my mind that so little exercise can wreak havoc in such a big way. And perhaps getting stuck on the absurdity of my current situation has created a stumbling block preventing me from overcoming this obstacle.

I came to this realization after my consultation for dysautonomia at the Mayo Clinic in Arizona. When Dr. Goodman suggested that exercise needs to be part of my self-care plan, he gave me detailed instructions. First, he handed me a pamphlet with specific exercises geared towards persons living with autonomic dysfunction. Then he asked me to start with a few of these exercises. The first goal was to work towards completing them all on a daily basis. Then, after a month of doing all these simple stretching and strengthening moves, he recommended that I try adding some cardio exercise for just three minutes three times a week. He acknowledged that this may be very difficult for me to do initially, so he further advised me to take it slow and easy. He also said that it might take quite a long time for me to build up to longer exercise sessions.

So as I work with this new way at looking at exercise, I feel a great sense of appreciation for how Dr. Goodman approached the subject. I can tell you that it really made a difference when he gave me specific instructions while at the same time acknowledging how difficult exercise is for someone like me. In validating my experience, he helped me see that there may be a way to work around my obstacles to exercise.

In light of this experience, I'm wondering what changes you are struggling to make. I'm also wondering what you think you might need to help you move past struggling to success.

To get this discussion going, I invite you to leave a comment here or on the OMA&P! Facebook page. In addition to sharing with us the areas in which you are having problems, feel free to offer your suggestions about what has worked for you to others who are struggling in areas you feel you have mastered.

Friday, March 25, 2011

My apologies if you've come here looking for My Mayo Clinic Adventure Day 3 post, because as you can see, it's not here!

I've spent this past week incorporating extra rest into my schedule to recover from my week long trip to Scottsdale, Arizona. Unfortunately, I have run out of gas and wasn't able to complete an entire week of blogging during my first week back home.

So thank you for stopping by and thank you for your patience with me as I work to get back on track with my normal blogging schedule. I plan to post all about Day 3 this upcoming Tuesday, March 29. Until then, I plan to have a quiet weekend resting, relaxing and refueling my tank. I wish the same for you too.

Thursday, March 24, 2011

In my Mission 2011 post today, I want to talk about my big special event this month and what I did to plan for it to make it a success.

Planning for Success
As you know from my posts earlier this week, last week I traveled to Scottsdale, Arizona for a neurology consultation at the Mayo Clinic. After making this appointment in January, the first step I took was to imagine what this experience would look like. That led me to the activities I needed to plan for: travel, packing and trip schedule.

Travel

My first consideration was traveling to and from Scottsdale. I talked it over with my husband and we decided to travel by car for this trip, with Robert acting as our designated driver. With the help of Google Maps I learned that the trip by car would take approximately 6 to 8 hours. Before we left, we decided that we would stop at the halfway point, Blythe, California, to have a late lunch/early dinner. Once we got on the road, we discovered that taking advantage of the rest stops every 100 miles or so was also a helpful strategy. I was amazed at how stiff and sore I got just from sitting still in the car for an hour and a half at a time.

I made sure to bring along a couple of assistive aids to make sitting in the car more comfortable. These included a travel neck pillow and a car seat cushion. On the trip to Scottsdale, I realized that I had forgotten something. Since I am so short I have problems resting my feet comfortably on the floor of the car when I'm in the passenger's seat. I improvised by using my backpack as a foot rest. On the trip home I acquired an old phone book to use in place of my backpack. That worked so well that when I got home I used duck tape to turn the phone book into a more sturdy foot rest alternative.

Packing

As for packing, I admit that I usually I wait until the very last minute to get my bags packed. Since waiting to the last minute doesn't work so well for me anymore now that I am dealing with chronic pain and chronic fatigue, I decided it was time to allocate a full week to this task. I broke the task of packing up into smaller projects that could be tackled one day at a time. So, for example, I spent one day packing up all my toiletries, another day packing up all my clothes, a third day gathering all my medical records for my appointment, etc. Overall, this strategy worked much better and is something that I will repeat the next time that we travel.

Trip Schedule

Since the purpose of this trip was to obtain medical care, Robert and I didn't expect to be doing much sightseeing. We knew our days would be planned around whatever medical tests and follow appointments that were scheduled after my initial consultation. Knowing that these activities would use up a lot of my energy, my main goal during the week was to use any free time we had resting and napping.

When Robert and I travel for fun, which we do about once every 18 months, we plan for one day of rest after each day of activity. For me, this is a big change from how I used to approach travel. Previously, I was the kind of person who filled every moment of a trip with all sorts of activities befitting the destination. With chronic illness, this simply isn't possible anymore. Ironically, Robert actually likes my new approach to travel activities much better.

The Week Before and After

The week before we left I made sure not to schedule any appointments or errands outside the house. When I wasn't packing I made sure that I was resting. I also made sure that I got plenty of sleep as I knew that my sleep schedule would be disrupted by both the travel to our destination and a schedule imposed upon me by all my anticipated medical appointments. I find that the night before we leave on a trip I tend to not sleep very well, probably because my body gets wired from anticipation which makes it difficult for me to fall and stay asleep.

Upon our return this past weekend I've been focused exclusively on getting extra rest and sleep to recover from our trip. Again, I have made sure not to schedule any appointments for this week and limited my errands to a trip to the grocery store where I purchased more ready-to-eat items to conserve energy on meal preparation. So far, this has worked very well for me.

The Big Pay-Off

I know my plans have paid off because I haven't flared up. Through planning, pacing and resting, I have learned to manage my symptoms despite travel, a change of schedule, unfamiliar surroundings and a different bed. Now that is my definition of successful special event planning.

Wednesday, March 23, 2011

After meeting with Dr. Goodman on Monday and receiving my itinerary for the following three days, it was time to get down to the business of figuring out my diagnosis. Of course the only way to do that was to run some tests.

Day Two - Tuesday, March 15

8:00 am: Eight o'clock in the morning -- my autonomic testing was scheduled bright and early. Getting up that early in the morning is not something that is easy for me to do. Thank goodness for my wonderful husband Robert who handled the logistics of getting me back and forth from the hotel to the clinic.

The instructions attached to my itinerary said I should eat a light breakfast 3 hours before the test and the no food or drink after that. So I did the math, and decided I would go fasting because I wasn't getting up at 4:45 am to eat a light breakfast.

I was also instructed by Dr. Goodman to hold my sleep and allergy medications, which I thought would be no big deal, Well, that was until I couldn't fall asleep, tossed and turned when I finally did fall asleep and then woke up with a massive headache at 4:30 am. Since I needed to get up to take something for the headache and that medication needed to be taken with food, I wound up having a light breakfast after all!

Tests always make me anxious and I felt even more so when I read that Robert couldn't be in the autonomic testing lab with me. Luckily for me, the tech who conducted the test (boy I wish I could remember her name!) was warm, kind and sweet. We spend much of our time together talking about life in Arizona, gardening and her trips to California. She really made me feel relaxed; I knew I was in good hands.

Over the course of about an hour and a half, she conducted four different tests: 1) a resting sweat output test, 2) a deep breathing test, 3) a Valsalva test and 4) a tilt table test. With the exception of the tilt table test, all the other tests took place while I was laying down on an exam table. I suspect that during the moments of quiet before and between tests, the machines were recording my heart rate and blood pressure to establish some baseline and recovery measurements.

1. The resting sweat output test: For the first test, the tech applied one small circular capsule to my left arm and two to my left leg. Then she ran a small electrical current through the capsules to stimulate a sweat response. It felt like a buzzing or stinging and was a bit uncomfortable. My skin didn't feel sweaty, but that was because the capsules where actually drawing sweat into them to measure the amount I produced. This part of the test last about 5 or 10 minutes total.

2. The deep breathing test: This test was surprising similar to using my emWave PSR device. I was instructed to watch a breath pacer, which was a light bar that gradually lit up when I was to breath in and gradually went out when I was to exhale. Each breath occurred over about 20-30 seconds and I needed to complete eight deep breaths per session for a total of two sessions. Thank goodness there was a break between sessions, otherwise I might have gotten really lightheaded and passed out.

3. The Valsalva test: This was a different kind of breathing test. I was instructed to take a deep breath in through my nose and then blow it out through my mouth for about 20 seconds into a tube which was connected to the blood pressure meter. With my exhalation, I needed to maintain a constant pressure of 40 mm Hg. I got one practice run before completing two sessions that were recorded. Let me tell you, it was hard to hit and maintain that 40 mm Hg pressure mark, but I seem to have mastered it by my third attempt.

4. The tilt table test: So the table that I had been laying down on for the previous three tests actually moved from horizontal to vertical and back. Before any of the testing began, the tech actually had me step up against it while it was vertical and then lowered me down into a horizontal position. This time, big, wide pieces of velcro secured me to the table for my trip back upwards. The tech explained to me that she would only be raising me up 70 degrees, so in essence I was ever so slightly tilting backwards.

This part of the test was hard on me; I just don't do well standing up. For this test, I had to stand still for 10 minutes. Quite honestly, it was the longest 10 minutes of my life. At the 8 minute mark, I really wasn't feeling well at all: quite light-headed and woozy. The tech said we could stop, but I asked if she wanted me to tough out the last two minutes, which I did. I could see my blood pressure readings during this part of the test and my brain registered that my blood pressure was steadily dropping over time. 'That can't be good,' I thought to myself. At the end of the test, I was lowered back down into a horizontal position.

After all these tests, I needed to take some time to recover, first laying down, then sitting up. I eventually slid off the table and headed for the chair next to the tech's desk, where I spent a few more moments before heading out of the lab and back to Robert in the waiting room. I definitely felt a little wobbly on the walk out.

The only other thing I needed to do was check in with the Scheduling desk to see if any of my outstanding appointments had been scheduled yet. A friendly staff person checked and let me know they were still pending. She gave me a card with a number to call later in the day so I could check back on their status.

Thankfully that was the only test scheduled for Tuesday. I was glad when we finally made our way back to the hotel, eager to spend the remainder of the day resting and napping.

Tomorrow is my regularly scheduled Mission 2011 post, so I'll be back on Friday to share my day 3 at the Mayo Clinic with you.

Tuesday, March 22, 2011

I spent all of last week in Scottsdale Arizona so I could be seen by dysautonomia expert Dr. Brent Goodman at the Mayo Clinic. Beginning this week, I want to share with you my impressions of this experience. This was my very first time traveling outside of the Los Angeles metropolitan area to seek medical care.

Day One - Monday, March 14th

1:00 PM: I arrived right at my check-in time, delayed in getting there 15 minutes early by road construction along Shea Road. As we arrive, I see that the clinic building is a soft grayish-tan color that almost blends into the surrounding desert landscape. Robert heads for patient drop off curb at the front door, I get out and I hurry inside.

Just inside the sliding glass doors is a reception desk. The staff sitting there smile at me and ask me where I am going. "Third floor," I said. They let me know the elevators are on the other side of the wall and then a volunteer pops out from behind the desk to escort me there.

'Wow,' I think, 'That is some kind of service.'

It's a short elevator ride up to the top floor of the building. When I disembarked, I see a large waiting room half full of people. Ahead of me is two poles connected by rope line with a sign for Check-In on the left and Scheduling on the right. I get into the Check-In line and wait for the two people ahead of me to get called to the large oval desk where there are four smiling employees working the Check-In windows and four working Scheduling windows.

'Seems like everyone here has a smile on their face,' I note to myself. 'This must be a nice place to work.'

I present my appointment confirmation paperwork when I am finally called to the desk. The check-in is a breeze and I am asked to sit on the left side of the waiting room. By now, Robert has joined me, having no problems finding a parking space in the ample and free underground parking beneath the building. Then I am called to the far right window on scheduling side of the desk, which is registration. Since I pre-registered over the phone the week before, I just need to sign one form and present my photo ID and insurance cards.

As I am standing at the registration window, I hear my name called. "Here!" I say in response. The woman helping me lets the staff member calling my name know I am almost finished with my paperwork. I then go straight from the registration window to a exam room.

Sitting on a couch in an examination room, I get started on the three pages of forms I somehow neglected to complete in my appointment packet. I can only get a half page completed by the time Dr. Goodman arrives. For a patient who is used to waiting up to one hour to be seen by a doctor, I am quite amazed how on time they are here at the Mayo Clinic. Which means I need to make sure I get to any subsequent appointments on time, if not early.

After introductions the doctor asks me for my medical history. Like the professional patient that I am, I dive into my soliloquy, inviting the doctor to stop me and ask questions if I get off track along the way. He compliments me at the end of my story for giving such a complete and detailed history.

Next is the physical exam. He excuses himself from the room so I can disrobe and change into a hospital gown. He is gone long enough for me to work on the forms again, but I still don't have them done by the time he comes back. Once back in the room, he conducts one of the most complete exams I have had from a neurologist. Along the way, I am surprised to learn that I have problems telling the difference between sharp and dull pain stimuli; I silently chalk that up to my fibromyalgia which makes all pain seem bigger and stronger than it is.

He leaves the room again so I can change back into my clothes. This time, I finally finish those three pages of forms by the time he returns again. Now it's his turn to talk, explaining that I have three risk factors for dysautonomia: my previous cancer treatment, my chronic Hepatitis C infection and my type 2 diabetes. He's not sure if he can determine which ones are responsible, at which point I interject that I am not so concerned about that. I tell him what I really hope is that he can help me manage my symptoms better.

He wants to run several tests, including one to make sure that my symptoms aren't related to a particular type of cancer. 'I'll worry about cancer if the test comes back positive,' I think to myself. He is also putting in a referral to the Hepatology Department, asking for a consult on my Hepatitis C status. We end the visit with Dr. Goodman letting me know that we will meet again towards the end of the week to review the test results.

Robert and I walk back out to the waiting room. I ask him what he thinks so far and he's not sure yet. We both like Dr. Goodman, but Robert wants to reserve judgment until he sees what tests the doctor orders and what his recommendations are.

They call me from the Scheduling side of the desk and give me a pager. The staff person helping me lets me know Dr. Goodman has ordered eight different appointments for me and it's going to take some time to schedule all of them. When the scheduling is complete, the pager will go off, letting me know I need to head back to the desk and pick up my appointment schedule.

Robert and I spend most of the time in the waiting room, talking about our expectations and reviewing my first meeting with the doctor. Then we head down to the parking lot so I can grab a snack I left in the back seat of the car. The time seems to move quickly, and by the time we return to the waiting room, my pager is going off.

Up at the Scheduling window I am handed my "itinerary" for the week. They still need to schedule my follow up with Dr. Goodman and they are still trying to get me into the Hepatology Clinic, so I need to check back with them tomorrow for these appointments. As I stop to visit the ladies room on our way back to the car, Robert studies my itinerary and starts figuring out wake-up times, meals breaks and how much time to allocate to travel to and from the clinic.

Once back at the hotel room, I take a stab at refining his schedule, since some of the tests require either fasting or no eating and drinking for three to four hours beforehand.

It's a good thing I asked about how long I needed to stay in Arizona when I scheduled my appointment. I got very good advice when I was told to schedule my first appointment on Monday or Tuesday and then plan to keep the rest of the week open for tests and follow up. By the end of day one, I already know I have appointments for the next three days...

Come back and join me tomorrow. I'll be writing about my experiences with autonomic testing, catecholamine testing and an EMG and nerve conduction study.

Monday, March 21, 2011

"...learning to feel comfortable saying, "I am a person with disabilities and I require reasonable accommodations."

Apparently that was a difficult thing to ask of you.

So today I want to write more about why I think it is important to feel comfortable saying the "d" word, especially if you are a person living with invisible illnesses, like cancer, fibromyalgia, Hepatitis C, type 2 diabetes and dysautonomia.

There have been a lot of brave and courageous people who came before us that lead a disability movement demanding civil rights for people that are "differently abled." Their goal was to obtain equal access and equal opportunities for inclusion into society.

While many of these pioneers lived with mobility impairments and used wheelchairs, they also recognized that the disability community was a heterogeneous group consisting of persons living with a variety of different challenges, from blindness and deafness, to mental illness and invisible illness. They recognized that disabled people were a minority, a minority that anyone could join at any time in their lifetime.

They stood together and asserted their civil rights to ask that barriers be removed so that they could participate in society to the best of their ability. If you look around today you can see many of the fruits of their efforts: ramped entrances to buildings, curb cuts, disabled parking spaces and seats at venues, sign language interpreters and reading materials available in Braille.

While those of us with invisible illnesses don't look disabled on the outside, we need to have barriers removed so we can live our lives to the fullest too.

While we come up with many ways to describe our illnesses, like chronic pain, chronic fatigue, etc., nothing quite has the impact as saying we are disabled. It is that one little word that can literally open doors for us that a lot of other words we use cannot. That one little word gives us clear rights to the reasonable accommodations we need to remove barriers. Plus it helps others in our society expand their definition of who people with disabilities really are, thus creating the disability culture that was the secondary goal of the disability movement.

That said, let me clarify a few things about what being disabled means:

Being disabled doesn't mean you need other people's charity or pity; it does mean you might need barriers removed so you can actively participate in society.

Being disabled doesn't always mean you can't work; it does mean you might be entitled to some extra help to be able to or continue to work.

Being disabled doesn't mean you have to put up with harassment; it does means that by law you cannot be discriminated against in activities like: work, housing, transportation, shopping and health care.

Being disabled means that your spouse or significant other can take time off work when needed to assist you and not have to worry about losing their job in the process.

Being disabled doesn't mean you always need help; in fact, as the result of laws and increased societal acceptance, it often means you can be independent and even offer help to others.

So this week I want to hear your thoughts about this topic. I want to know if you can accept the idea that your health challenges make you a member of the disability community. I want to know if you can embrace this identity or not. Can you say the "d" word?

Friday, March 18, 2011

Image by playerx via Flickr
If you use Twitter, you mostly probably have seen him: The Fail Whale. He is the image you get when Twitter is over capacity and you aren't able to post your tweet. He is a creation of artist YiYing Lu (@yiyinglu) and his purpose is to bring a bit of levity to a moment of frustration with Twitter.

Now blame it on the time change, or the weather or that fact that I have been really busy both last week and this week, but I find myself in a grumpy mood and stuck ruminating about some fail whale moments that occurred in the past few weeks.

So I thought 'What better way to get over my grumpy mood than to hand out the occasional Fail Whale Award to the people who inspired this mood in me.'

And The Fail Whale Goes to ... Doctor S.

I had an appointment with a new rheumatologist. It's been a while since I have been seen by one for my fibromyalgia, mostly because the last one wasted my time and didn't do a whole lot for me. As fate would have it, this new doctor just so happened to share office space with the last rheumatologist I had seen. That was a little weird, but since I heard good things about this new rheumatologist from two different and reliable sources, I decided to give him a try. So I finally made an appointment...

Now if you live with chronic illness, you know what a big deal going to a doctor's appointment is. So I was pretty proud of myself for arriving on time and keeping myself together. That is, until the receptionist discovered that I had been seen by the other doctor in the office.

You see, these two doctors have a policy: they don't see patients that the other one has seen. And apparently, they don't let new patients know that up front. So the long and the short of this story is: I was refused to be seen by Dr. S.

Saying I was pissed doesn't begin to describe how upset I was. Most of all, I was mad I had wasted my precious energy to go to this appointment and then be handed such an unexpected outcome.

But after I cooled off for a moment, I remembered a sign in this doctor's office: We charge $100 dollars for missed appointments. This was definitely a sign that, no matter how good he might have been, this wasn't the right doctor for me.

If you live in the Los Angeles area and want to know the names of the doctors I am talking about, contact me. Because I will tell you who they are.

Sick Chick Tip: The next time you find you are one of those little birds trying to hold up a huge whale, just forget it and drop the string. Those fail whales are too heavy for you and just not worth your precious effort and energy.

Thursday, March 17, 2011

Image by Kuranes via Flickr
So far, we've talked about what a special event is and I described my first successful special event to a concert at Dodger Stadium. Now it's time to look at the fibro-friendly things you can do when attending a special event means traveling to a destination away from home.

I Am Disabled

More than any other strategy, I think the key to fibro-friendly travel is learning to feel comfortable saying, "I am a person with disabilities and I require reasonable accommodations." This might seem like a big task for those of us who have invisible chronic illnesses.

(a) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;
(b) a record of such impairment; or
(c) being regarded as having such an impairment.
(P.L. 101-336, Sec. )

I hope I've convinced you that you're truly entitled to say you are disabled. If you follow my advice, I guarantee that you'll find that mastering this skill will result in big energy-saving payoffs. Asking for and taking advantage of available help can quite literally can make the difference between having fun or suffering miserably while out-of-town.

I Require Reasonable Accommodations

Not sure what to ask for? Let me provide these suggestions:

When you call your airline to confirm your flight plans, you'll want to tell the agent, "I am a person with disabilities and I will require wheelchair assistance in the airport."

When you call your hotel to confirm your reservation, you'll want to say, "I am a person with a disability and I will require a shower bench/grab bars/a raised toilet seat/etc. in my hotel room."

Upon reviewing your travel plans by car, you are going to want to let your traveling companions know, "Since I am a person with disabilities, I'll need to stop and stretch my legs every few hours so I don't get stiff and cramped up."

Once at your destination, you'll want everyone to know, "Since I am a person with disabilities, I'm going to need to stop and rest every few hours. That means I might not be able to participate in all the activities you have planned for the day."

At the concierge desk at the hotel, let them know, "I am a person with a disability and I need to rent a mobility scooter to help me get around while I am here." and "I am a person with disabilities and I need disabled seating for this show/concert/event I want to attend while I am staying here."

Lessons Learned in San Francisco

How did I get so fibro-friendly about travel? I learned to ask for these things after a completely disastrous trip to San Francisco in 2005.

I had only been living with fibromyalgia and chronic illness for about 11 months and was still pushing myself way too hard. So when I got to San Francisco, I simply did too much. I didn't ask for help at the airport or hotel and scheduled way too many activities and not enough rest. The whole weekend I was tired but wired, which resulted in poor sleep. By the time we got to the airport to fly back home, I almost collapsed from sheer exhaustion. It was only then did I ask for a wheelchair.

Don't Take "No" For an Answer

It might be hard the first time you ask for help. You might even be hesitant because you are afraid someone will say "no." Don't let fear and embarrassment stand in your way. Take the time to do a little bit of extra preparation to make sure your requests won't be ignored or denied:

If you have a disabled parking placard, bring it with you on your travels and display it if you are met with resistance.

Consider asking your doctor in advance for a letter that states you are a person with health problems and require assistance. You might even consider asking them to list your medical conditions ... at least the ones you are comfortable disclosing and are relevant to your requests for accommodations.

Don't Let Travel Stop You

Most of all, I hope this post inspires you to reconsider your plan for travel. I believe that if you follow the suggestions above, the prospect of travel will no longer prevent you from considering special events that occur away from home. You might not be able to attend as many events as you would like, but you still can go from time to time and arrive back home feeling in control of the management of your chronic illness symptoms.

Tuesday, March 15, 2011

Image via WikipediaUgh, can it be that time of year again? I mean so soon? Didn't we just get an hour back a few months ago and now we have to give it back? Sigh.

Amidst my sleep deprivation in these last 48 hours, I vaguely remembered that I wrote a post about my time traveling woes about this time last year. I found it and discovered that I clearly forgot about my plan to try and treat the switch to daylight savings time like a special event:

Next time we move the hands on the clock forward or backward, I need to plan to take a week off to adjust. A week to just stay close to home, rest and relax, rent my favorite futuristic movies from Netflix and start my own private bi-annual sci-fi marathon.

Instead I blundered and scheduled another special event to occur concurrently with the time change. Can I blame it on fibro-fog?

So to avoid another mistake like this, I am adding the time change to all my calendars: highlighted and circled in red. Then I'm adding a note with these time change tips courtesy of USA Today:

Plan to go to bed and get up 30 minutes earlier for several days before the time change.

Get outside and soak up more sunlight in the days before and after the time change to help reset my circadian clock.

Limit naps to 30 minutes during this transition time.

Make sure to add more warm baths and soothing music to my bedtime routine the week before and the week after the time change.

This is good advice I discovered too late to try this time around. But lucky for me, there will be a whole bunch of next times for me to practice implementing this advice until I learn how to time traveling in a fibro-friendly way.

Monday, March 14, 2011

Wow, where do I even begin? A lot of things happened here at OMA&P! last week. I admit that today I am still in recovery mode from all the excitement.

If you missed any of my posts regarding the National Fibromyalgia Association (NFA), I've created a bit.ly bundle that groups all the posts together into one link for easier access: http://bit.ly/gOZBIZ

What you might have missed over the weekend is the publication of Lynne Matallana's official statement over at the FibroHaven blog. It also was sent out as an email with the subject line NFA President's Message from the address newsletter@fmaware.org. I just received my copy Sunday at 4 am.

What I haven't shared with you yet is that I was scheduled to interview Lynne last Thursday, March 10th. I was contacted by a PR consultant working with her last Tuesday after my post What Ever Happened to the National Fibromyalgia Association? was published and apparently shared and discussed at a NFA Board meeting that evening. Unfortunately, that telephone interview was canceled by Lynne one hour before our scheduled meeting time. As I write this post, I am still waiting to hear back from Lynne's PR consultant who promised that the interview would be rescheduled.

Personally, I want to take a couple of days to digest the events of last week and consider Lynne's statement. But that doesn't mean I haven't been wondering what your opinions are about her statement. So this week I want to know: What do you think of the NFA now?

You have my word that I will publish every comment I get on this topic. For the comment shy, I want to make you aware that you can comment anonymously on my blog (which has been the case for a while now.) I am hoping to understand through your comments whether you are satisfied with the statement that has been released or if you feel more needs to be said.

Friday, March 11, 2011

Working on a tip from a chronic friend, I sent an email to Herb Smith, Chairperson of the Board of the National Fibromyalgia Association (NFA) this morning.

I just received this late word from him this evening. He provided this statement for me to post here on Oh My Aches and Pains!

Selena, thank you for contacting me. We saw your blog at our board meeting on tuesday and asked Lynne to draft a statement about NFA, our financial challenges and future plans. Due to a massive drop in income we have had to make many changes with the intent to continue support of our community. We intend to release a more detailed statement soon. But without income we cannot continue the level and breadth of services we once did. Our goal is to focus NFA on research and education. Herb
Sent from my iPhone[sic]

I hope this means that a statement from Lynne Matallana will be coming very soon. I believe that the release of a full, honest and complete disclosure of the NFA's status is only way to avoid their past accomplishments from getting overshadowed by the current way they are running their organization. I promise to republish any official statement made by the NFA here on OMA&P!

I did not write this these and at this time I choose not to respond to it them.

I would respectfully suggest that you contact me or my wife Jan Chambers directly and simply ask us yourself what questions you have rather than have hundreds of people calling our personal home line just to be told the same thing.

My wife's FM experience (for the matter our whole family's) put us on the same path as hundreds of thousands of other FM patients trying to find solutions to their pain. She is sincere in trying to give back to the FM community her time (and our money) trying to encourage more research and then get that research out to the public - to make FM patients lives better.

Your blog makes it sound like there is something sinister going on. Perhaps that is for your readers. The real problem is that it takes money to run these programs and donations in this economy are down with all charities, not just the NFA. In order to continue to provide services to the FM community a limited portion of the NFA's programs are being transferred to the NFMCPA organization. It is unfortunate that those in the FM community cannot simply cooperate rather than argue over turf.

With all due respect your blog borders on defamation and impunes a person who just wants to help. More important it consumes our (hers and mine) time and energy that could be better spent pushing for more research, education and understanding of a medical disorder that many in the world simply thinks is not real. WE KNOW IT IS REAL and moreover know first hand how it affects us and our families. My plea is for more cooperation. Call us. Get to know us before you judge our intentions. My wife has spent the last four years donating her time to this cause.

It is too bad this next comment wasn't the first one submitted to my blog by the Chambers. As you can see, Joe left his comment first with a link to his law firm. Then he somehow found my unlisted telephone number and called me at home. Feeling shocked, among other things, I decided I did not have the energy to call and discuss his concerns. I replied to Jan's email at 4:31 PM PST and let her know I did not have the energy to speak with her today. I also asked that they both refrain from calling me at home.

(This is a re-submission of my earlier comment.)

Dear Selena,

Early this morning I sent an email to you asking if you would please call me on my cell phone. I have not heard from you.

Since you have all of my personal contact information, I’m wondering why you didn’t call me when you first wondered about what I was doing. The National Fibromyalgia & Chronic Pain Association (NFMCPA) website isn’t quite ready for the public to use as you could easily see. I would have happily told you what we’re working on as I am very excited about all of the great Awareness Day events we have planned in addition to the community programs.

We only get one chance to make a good first impression, and I wanted to be sure all the links were ready before the National Fibromyalgia & Chronic Pain Association made its public debut with a proper press release on March 15. My employees and I have continued to work on the website to make it something wonderful for everyone to use while you continue to make disparaging remarks and not give me the benefit of the doubt and contact me. This would have all been so pleasant if you had been truly interested in what I was doing and just called me. I have never had anything to hide—you found me easily just like many others have.

I appreciate your interest in my work and invite you to help me. Would you like to do that? I would love for you to help me. I am a volunteer—always have been. You seem to be interested in keeping the public up to date, and I value having sharp people on my team.

Tomorrow I’m serving on a panel discussion for the Utah Fibromyalgia Association until 2 PM MST. Then I’m coming back to work on the website.

Image via Wikipedia
So right about now I am feeling like Pandora right after she opened that box full of all sorts of bad things.

I want to give you a head's up on some recent, very eye-opening discoveries I have made. Unfortunately, they only raise more questions than answers...

On March 2nd, I got an email from newletter@fmaware.org with a link to something called the FM-Chronic Pain News Report. As I mentioned before, the link took me to a website that had the name National Fibromyalgia and Chronic Pain Association in the bottom left corner. That was a surprise to me since the publication featured the logo of the NFA. I was also suspicious because this news report specifically states that this publication will only be available by paid subscription in the near future.

When I went back a second time today, I noticed that the URL of the link began with http://www.nfmcpa.org. So I deleted everything that came after that and found a website that appears to be under construction. I discovered who owns this site after clicking a link that says About AFMCP - Our History at the bottom right:

The Association for Fibromyalgia & Chronic Pain is a 501(c)3 not for profit organization founded by Jan Chambers, who developed the Utah Fibromyalgia Association. We work to support people who have chronic pain illnesses and their families and friends by contributing to caring, professional, and community relationships. Through continuing education, networking with support groups/advocates, and affiliation with professional organizations, the members of the Association for Fibromyalgia & Chronic Pain have a place to be informed, get involved, and recognize achievements.

Does this mean that the Association for Fibromyalgia & Chronic Pain and Jan Chambers have taken over the National Fibromyalgia Association?

If so, why haven't they come right out and said so?

My husband got an email from newsletter@fmaware.org on March 9th. I have not idea why he got the email and not me. That email was a "Special E-Alert" with the subject line FM Aware Newsletter. Using the NFA logo, it was an advertisement for something called Fibro Innovations and a Dr. Cory Kingston. I went to the website of Fibro Innovations and wouldn't you know, they linked right back to that FM-Chronic Pain News Report I mentioned above.

Seems The>Association for Fibromyalgia & Chronic Pain a.k.a the National Fibromyalgia and Chronic Pain Association a.k.a the National Fibromyalgia Association did an in-depth report on Dr. Kingston in the FM-Chronic Pain News Report and then turned around and sold him advertising access to the NFA email mailing list.

I don't know about you, but I am seeing red right now.

My advice: do not trust anything that comes disguised as the National Fibromyalgia Association because I do not believe it is the NFA we have know and relied upon anymore.

I think it is time for all of us to contact Janet and let her know we are on to her and her deceptive practices. You can email her at jan@nufibroconn.org, write her at Utah Fibromyalgia Association, 31 Federal Avenue, Logan, UT 84321, call her at 435-753-4148 or fax her at 435-752-3556. (ADDENDUM: See a response from Joe Chambers here.)

Let me also say "Shame on you!" to Lynn Matallana and the Board of Directors of what I suspect is the now defunct National Fibromyalgia Association for their role in this deception. They should have been clear with the previous clients and donors associated with the NFA about this transition of services to another non-profit agency.

Cause Marketing, LLC is a boutique public relations and marketing agency specializing in aligning your business with not-for-profit organizations for increased awareness and to improve sales and goodwill.

As an Affinity Company of the National Fibromyalgia Association, Cause Marketing, LLC is uniquely positioned to effectively reach the significant Fibromyalgia and other chronic pain illness markets – millions of individuals anxious to learn about your products and services!

Then I was shocked to see on the contact page that the email for this company is LMatallana@4CauseMarketing.com. The rest of the contact information is: telephone: (714) 414-6552; address: 2578 N. Courtland, Orange, CA 92867.

So is L. Matallana selling the NFA email database of persons living with fibromyalgia to everyone and anyone willing to pay?!?

So maybe the Association for Fibromyalgia & Chronic Pain and Jan Chambers didn't take over the National Fibromyalgia Association, they just purchased the email database and the rights to use the NFA logo. This is still a deceptive practice and still worthy of your complaints to Jan Chambers.
Please feel free to send L. Matallana an email and let her know what you think of this new money-making endeavor conducted under the auspices of the NFA.